Dr Charles Pither FRCA
Consultant Pain Specialist, St Thomas' Hospital, London

"When the doctor and the physician agree about the problem, then the patient gets better" Adolf Mayer

People suffering pain tend to consult their doctor. They want to tell him or her their symptoms and describe how they feel because they believe that by so doing the doctor will be able to diagnose the problem and rid them of their burden of suffering. On their first visit the person experiencing pain may not necessarily give a lengthy description of their symptoms: they expect the doctor will spot what is wrong even on first hearing. The patient wants certainty, treatment and closure. Interestingly enough so does the doctor!

The doctor has the task of unravelling the description of the pain and detecting physical signs to be able to reach a diagnosis. He may order tests to elucidate pathology and to eliminate the possibility of ‘something serious’. Often the initial hypothesis will be correct, the tests will demonstrate an abnormality and treatment can proceed. If this is the case then the mind of the doctor switches from listening to the symptoms to just hearing them. The problem has changed from a diagnostic puzzle to a case of X or Y. The physiology and pathology now take precedence over the subjective experience: the person takes second place to the disease. Whilst this aspect may not necessarily be what the patient wants, it may not matter overly much if they are getting better and feel the doctor is in control.

Michael Balint(1) interpreted this interaction in terms of the patient 'offering' an illness and the doctor either accepting it or not. In the case above acceptance implies that the symptoms and signs add up to a formulation which is agreeable to both patient and doctor. Both the patient and doctor can move forward within a mutually satisfactory relationship.

Surprisingly often however, the script does not run like this. The symptoms are confusing, the signs equivocal or absent, tests negative, often repeatedly so, and no cause for the problem can be found. This may not be a problem if the symptoms settle, but what if they don’t? Suppose the tests are all negative but the pain continues. What if the doctor can find nothing wrong, but the pain gets worse? The doctor, believing more in the 'hard facts' obtained from investigations, undermines the patient's subjective account, and implies that the problem is not as bad as the person makes out, or that emotional problems are to be blamed. In essence the patient's proposition of illness has been rejected. The patient loses faith in this doctor and seeks a second opinion. How do they describe their symptoms to the next doctor? Will they give a cursory run through of their problems, or will they, perhaps, wish to emphasise this point or that, or stress how particularly severe the symptoms are in the hope that the doctor will not dismiss them as before and pick up the fact that they really do have a serious problem?

How might this exchange be influenced by ten years of pain, consultations with specialists too numerous to remember, and six failed treatments? Such is the lot of the typical patient with chronic pain referred to the INPUT unit at St Thomas’ Hospital. How can this experience not alter the way the patient approaches the next doctor? If the patient has felt dismissed by a previous doctor as ‘imagining’ their symptoms, how will this affect how they recount their problems to the next?

Unfortunately a great many chronic pain sufferers have no definable lesion to account for their pain. Conventional treatment has by definition failed. They continue to suffer in spite of the best efforts of the medical system. Such a situation certainly does not imply that the pain is not ‘real’. It is now clear that chronic pain causes degrees of suffering and limitation of quality of life worse than many better-defined diseases. Nor is it the case that that there is nothing physically causing the pain within the body. The experience of pain is virtually always caused by processes within the body, albeit that that such processes are not identifiable or definable within current medical or psychological understanding. The concept of imaginary pain is untenable. One either has pain or one doesn’t: pain is always real to the sufferer.

Chronic pain is a particularly destructive illness because its prolonged course adds to the burden borne by the sufferer. As the symptoms progress and medicine seems impotent to help, the woes and ills of the victim multiply and foment like rumours in a schoolroom. The ‘physical’ pains become embellished with distress, doubt and disquiet. Incapacity leads to joylessness. Pain and worry lead to sleeplessness. The seemingly endless catastrophe of existence fuels depression and helplessness. Ambition disintegrates alongside self-esteem. The consultation process becomes more fraught because the patient fights back both an admission of these features, and their tears, because they fear that once they show mental distress or ‘weakness’ their physical symptoms will be dismissed.

The doctor also has a problem within the consultation. His or her language and lexicography is medical and yet what they hear cannot be boxed into this framework. They cannot use it diagnostically and yet the situation demands more than providing sympathy. The pain sufferer does his or her best to describe the sensations and feelings that trouble them and that they are convinced are anchored in physical pathology. They struggle to find the words, and often say how difficult it is to describe what they feel. But how can any language ever find terms to describe the perturbations of neurology and psychology that underpin these essentially human ‘feelings’? The events, situation and processing associated with them are always unique to the person. Why should language be able to effectively describe such experiences to another person? Effective communication always requires both parties to be speaking the same language. What if one person doesn’t speak ‘Chronic Pain’? Perhaps neither person speaks ‘Chronic Pain’. The truth, as Virginia Woolf remarked is that "the merest schoolgirl when she falls in love has Shakespeare and Keats to speak for her, let a sufferer try to describe a pain in his head and language at once runs dry." Ultimately the lived experience of pain defies linguistics.

The starting point for this project was to explore whether adding a visual dimension to the language of chronic pain could help the interaction between a person with pain and the professional sitting opposite. The resultant images published in this volume speak for themselves and it is for the reader to judge whether they are moved or changed by the images.

From my perspective the endpoint is about a realisation that the consultation process can move from the conventional medical model to something of more value for both patient and doctor. I have come to appreciate that there can be another dimension to the crucial interaction between doctor and patient within the two parties engaged in the consultation process. This can be seen as a translation of experience, and is essentially a transaction between the lived experience of the sufferer and the non-judgemental acceptance of these offerings by the physician. Balint's thesis is still tenable; doctor and patient need to establish mutual ground to find a way forward. The addition of a visual dimension can aid this process because it can allow both parties to image and share the problem from a second person perspective(2). By finding time to share in the patient’s journey a relationship can develop that can shift the doctor’s role from that of enactor to facilitator, with both parties working together to reduce the impact the pain has on the individual. Perhaps the joke about the psychiatrist's advice to the obsessive is relevant to doctors treating those with chronic pain: ‘don’t just do some thing – stand there’!

Life, as Scott Peck asserts, is painful (3). If my back is painful and I am out of work and my wife has left me, where do I hurt? When I am heart-broken where do I hurt? The age-old concept of sharing and talking about problems is increasingly denied the high tech medical environment in which doctors now practice. If doctors are to help pain sufferers who cannot be cured or eased by drugs or procedures, they have to relearn skills more familiar to alternative and primitive medical systems of listening and sharing. This construct aligns with the rubric of ‘narratives’ in medicine which has seen considerable interest and development in the recent years (4). For me it is clear that adding a visual dimension to the narrative can aid communication of much of what somehow needs to be communicated by those with unspeakable pain, but yet cannot be said with words.

References
1 Balint M The doctor, his patient and the illness, Second ed London 1964 Churchill Livingstone
2 Sullivan M 1999 'Between First-Person And Third-Person Accounts Of Pain In Clinical Medicine' pps499-506 in Max M Ed. Pain 1999 An updated review. Refresher Course Syllabus IASP press
3 Peck S The Road Less Travelled London 1990 Random House
4 Greenhalgh T, Hurwitz B. Narrative based Medicine. London 1998 BMJ